Covid Lungs week 8 plus plus

[AndsLee]

Hope this has worked... Welcome all.

Not sure if you have seen this on slack but they did an AMA with a guy who is working on long tail covid.

https://lookaside.fbsbx.com/file/Jellyfish-AMA%20with%20David%20Putrino%2C%20a%20physical%20therapist%20with%20a%20PhD%20in%20Neuroscience.%20%20%282%29.pdf?token=AWyQBTPql59JMQWWz4EzPUkbjWsHJIan47zHO8YRwsEf-bCywuu-GVhCj0VWFTjkQCwVDFL-nKzSyqxwRgrj7tzJhf1RkODgv7arrodmhQY7-fEFm9bkLjmFXi-5a7hhmdinP2jQStaVUnUiUf9nQhTKr0ChkQxeYW9xDtB8eSIZGlaUjk9QxEoJ9tYkf7FrLm1v1fq0RLdX6Yul4X1gvh

He's a physical therapist/ phd in neuroscience

His team think it's dysautonomia

Thank you @godhelpusall. Really good AMA.

That’s really interesting @godhelpusall thank you 😊 Going to look it up now. Wish he’d answered all the questions! Looking at everyone’s questions, especially the being women when dropping off to sleep etc, proves to me I had/have it and am (hopefully) in the recovery stage.

So, what do you all think about what he’s saying? Just read ip about it and feel freaked out tbh, is this a permanent thing? What do we do about it?

@Ernieshere sadly I'm allergic to stemetil so can't have it.

It's great that you've found something that masks the pitch of your T. Yes please if you could provide the link, that would be lovely! My T seems to be better st night atm weirdly but I'm taking nothing for granted!

Haven't read through today's posts but hope everyone is having the best day they can. 💐

@Whatnext2018 I read that the majority will recover fully in time

@godhelpusall Where does it say that? What’s the general time, does it say?
Reading up about it now, sounds scary?

Sorry having a bad evening, feel like my heart’s going crazy tonight, resting pulse in 80.s but goes down to 70’s up to 90’s, with that buzzy, thumping sensation inside, it’s so hard. No sleep last night due to nightmares and with this adrenaline feeling, doubt I’ll be able to relax

Do you all just wait for it to pass when it’s that adrenaline, fast heart beat feeling?

@whatnext2018 yes I just rest as much as possible and do something calming such as slow deep breaths.

@Whatnext2018 it doesn't say it there but I read that post viral dysautonomia most often passes. He talks about gently challenging the autonomic system but v gently. Have you looked at POTS? It's quite common in post viral fatigue. What scared you about it?

@godhelpusall Ahh ok, I didn’t look up post viral, stupidly, just the condition itself and it seemed to present as sonething there isn’t a cure for? Heart/brain issues etc possibly?

How can we challenge the autonomic system? I think I saw about pots with regard to the fast heart etc? I will look it up now. Where I am, I’ve been offered no info by doctors etc, I think you’re much better placed to be in the uk for all of this. I can only get info about it all from here or support groups, it’s all pretty new to me,
Really bizarre how I was better, not completely for a fair few days and last night and today all the crazy buzzing and adrenaline with the ringing in the ears/head.

Thank you @Egghead68 I’m trying to sit here calmly until it hopefully passes 🙏
I haven’t taken any Valerian today as I read it causes the nightmares but I think I’ll neer to continue taking.
I’ve had an emergency ectopic, Endo, year’s of fertility issues in the past, chronic kidney stones but I have never experienced anything as awful as this.
I’m still at a loss as to why it reacts in some of us like this but not others,

So do some of us here have Pots? How do we rest for it? Have you all consulted the doc about changes in heart rate? Wondering whether to book another app, he’s going to think I’m a hypochondriac after all the testing and all coming back ok, aside from the artiritis in the neck.

I haven't been keeping up with these threads but I was on one of the first "lungs" threads when I became ill @13th/14th March. I'm shocked but not surprised to skim read the stories here.

Like many of you I've had relapses, they relate directly to over-exercising. If I push myself I'm laid up with a tight chest and exhaustion for 2/3 days. I'm just coming out of my 5th or 6th episode of this now.

A friend has just sent this. Apparently a study of long-term CV sufferers is happening in the Netherlands -

nltimes.nl/2020/06/12/shocking-nearly-recovered-covid-19-health-issues-months-later

Thanks for the article @Throughabushbackwards. The more publicity this gets the better. Sorry you are still suffering.

Morning all, hope you're okay.

@godhelpusall thanks for the AMA. It's amazing that people around the world are suffering with the same nuances.

Does anyone have any sleep advice?

I've never suffered before but in the past 11 weeks I've had maybe 3 good nights and it's not helping.

Articles on how to achieve a good night's sleep aren't helpful because I instinctively do the correct things already (no caffeine, screens, alcohol etc).

This leaves supplements or medication. I bought some Valerian but I'm apprehensive to try it before I get my test results back in a few weeks.

In that AMA the person mentioned CBD and melatonin... After looking at options I noticed on the melatonin products it says don't take with autoimmune disorders. As what we're experiencing may be in that territory(!?) I'm reluctant to try it.

My issue isn't falling asleep -- It's waking 4 hours later with pain, trembling, weakness, SOB and being unable to get back to sleep.

Does anyone here take anything for sleep or have any advice on supplements please?

MillStone

How about lavender bath oil/lavender shower gel, and a bowl of porridge before bed.

I wonder if your blood sugars drop and the trembling & weaknesss are that?

They say 2 paracetamol help as well.

MillStone Are you taking Gavscon and/or Omperazole?

Acid reflux can be the cause of shortness of breath.

Take some after that porridge!

Morning @MillStone I would be interested to hear how others manage too, as I struggle with this.

I take magnesium before bed but haven't noticed any significant change. I also take CBD oil - this does help me drop off but doesn't help with the constant waking.

This probably goes against all sleep hygiene advice, but the best thing for me as a coping mechanism is listening to light chat-style podcasts. When I wake up I just press play and they distract and calm me enough to get back in the sleep zone. More of a coping strategy than a solution though.

www.thailandmedical.news/news/breaking-french-covid-19-research-reveals-that-the-hypothalamus-region-of-the-brain-is-also-a-target-for-the-sars-cov-2-coronavirus

@Ernieshere thanks yes on Omeprazole. I’ve recently switched to just 1 x 20mg in the AM. I also raised the head of my bed to see if that helps. In the past week the reflux seems to be improving, thank goodness.

The SOB at night is a weird one, to address it I straighten my body and lay on my side to allow my Diaphragm more space.

It’s funny you mentioned porridge, it’s my desert island food

@fedupofbed thanks for the info and sorry you’re suffering with sleep too. I might give CBD a try. I also using sleep stories, meditations and different noises to try and help me drift back off. Sometimes they work.

I already take magnesium - but in the AM - as part of a multivitamin.

@Millstone - it might be worth trying a dedicated magnesium supplement. I had similar sleep issues last year. I never fully got to the bottom of it, but suspect it might be cortisol related. It can cause adrenalin spikes. I am much better than i was. I am not sure what triggered the main improvement, but noticed most help when i started taking magnesium bisglycinate before bed. I also started supplementing b vitamins at a similar time. Vitamin d is also important for sleep. Best wishes - i remember only too well how rubbish it is.

@Monty6 Thanks for the advice, I already take the Bs and D and recently had a full run of nutrition tests which were okay.

What you mentioned about adrenalin spikes is interesting and how I recently described aspects if the disturbances.

I just Amazon Same Day'd a good quality bottle of magnesium bisglycinate and I think I'll up my B vits a bit. (longterm veggie).